Clinical Research Nurse - Liz Jacklin

My name is Liz Jacklin; I am the Clinical Research Nurse for the Niemann-Pick Disease Group (UK). I am based in the Willink Biochemical Genetics Unit at the Royal Manchester Children’s Hospital, along with Jackie Imrie, Clinical Nurse Specialist for Niemann-Pick Disease and, Dr. Ed Wraith Consultant Paediatrician. I am first and foremost a Mum to 3 boys, living with them and my partner, (who also has 2 boys) in Manchester. In my spare time I am involved in Scouting as a Beaver Scout Leader (6-8 year olds).

On a professional level I have been a nurse since 1990 and have worked with patients affected by Haematological malignancies (blood cancers) for most of this time. I became a Research Nurse in 1997. I was involved in clinical trials with patients with Multiple Myeloma and Leukaemia. A large part of the role was in supporting patients and their families who were affected by these diseases.

I experienced a grief of my own when in 2000 I gave birth to a little girl Olivia, 16 weeks prematurely. She died aged 5 and a half weeks. I took some time out after this and returned to research in 2003.

The post of Clinical Research Nurse for Niemann-Pick Disease came into being in March 2006. The aim of the post is to increase the ability of the NPDG (UK) to undertake and organise more clinical research, leading to raised awareness and understanding of this group of diseases. The post will enable the collection of much needed clinical data, which will help with patient support and therapy development. I share an office at the Willink and work very closely with Jackie Imrie, Clinical Nurse Specialist for Niemann-Pick Disease. In addition to my research work, it is envisaged that I will also assist Jackie in offering information and support to patients and their families.

Why do we need research?
In order to care for patients with Niemann-Pick disease and their families it is important to understand as much about the disease as possible. This is done scientifically by looking at data from cells and genetic information. Also in socio- medical terms by looking at the effects of the disease on people’s lives and how the disease affects individuals. There are currently no drug therapies licensed for use with patients affected by Niemann-Pick disease, but work is underway to develop such a drug. A clinical trial of Zavesca (Miglustat) has been running for the past 5 years and I am involved in co-ordinating patients on that trial.

I believe it is important for patients and their families to be aware of the work that is being carried out internationally to try to combat this disease. By working with other professionals and by publishing our research, we are able to raise the awareness of this disease and its profile with professional bodies. We hope to stimulate interest in the disease, encouraging doctors and scientists to generate much needed research projects which will one day lead to effective treatments for this group of diseases.

If you have any questions, or would like to discuss any aspect of research (it would be great to know your feelings on research or to hear any research ideas that you may have) please do not hesitate to get in touch with me. You can reach me by telephone on 0161 701 2967 or email elizabeth.jacklin@cmft.nhs.uk.